Stuck In A Rut

I have to admit, trying to come up with a blog post this week has been really hard. I generally like to keep things positive and hopeful, but I’m not feeling it this week. The monotony of life has caught up with me. Remember the movie Groundhog Day? Lately, it feels like I wake up every morning to Sonny and Cher, “I Got You Babe” on my alarm clock radio. What’s that saying–same sh*t, different day? That about sums it up.

I’m tired of supplements. I’m tired of thyroid medication. I’m tired of insulin shots. I’m tired of seizures. I’m tired of having to teach little things over and over. I’m tired of seeing my son struggle to communicate. I’m tired of hearing about my friends typical kids hitting every milestone so effortlessly. I’m tired of waiting for the day when my son has his big breakthrough. I’m tired of reading articles in medical journals until my eyes are blurry. I’m tired of the doctors not giving me decent answers. I’m tired of not being able to go out on a date with my husband. I’m tired of not being able to spend money on a cute pair of shoes. I’m tired of having to be responsible 24/7. I’m tired of feeling like an on-call nurse. I’m tired of being tired. I’m tired of Autism. (sigh)

I know some people are reading this and I must sound completely horrible. Some days I feel so ready and prepared to slay this beast armed with my latest arsenal of knowledge on a new treatment or supplement. Other days, not so much. My son slipped away into Autism virtually overnight. Why was it so easy to descend into Autism, but so damn hard trying to get out? Why can’t those asshats at Big Pharma just come out with an Autism vaccine already? (Insert sarcasm here)

Not only am I tired of Autism these days, but I’m mad too. I’m mad that my son can’t go out on a hot summer day and jump in the backyard pool and run and play all day like regular kids. Why can’t he? Blame it on the usual suspects, he has low muscle tone, reflecting light off the water can trigger a seizure, excessive heat can trigger a seizure, too much activity can cause his blood sugar to drop too low–the list goes on. His sister loves to swim, and play on the swings, and climb trees and roll around in the grass. She desperately wants her brother to join her. In her exuberance to include him, she excitedly gives him too many directions at once and he gets frustrated, she then gets frustrated, and then we all get frustrated and meltdowns ensue. It’s exhausting. And I’m tired of it.

So I decided to throw myself a pity party and wallow away in my sorrow. I tried to convince myself that recovering my son from autism was too hard. Maybe I should just start accepting the fact that this is the hand we’ve been dealt with and our lives would be easier if we just accepted it and moved on. This mountain is too big and I don’t have the energy anymore. The thing is, feeling sorry for yourself doesn’t do the dishes, or do the laundry, or cook dinner, or give the medicine, or do the schoolwork. And it certainly doesn’t recover your child.

You can just imagine what a joy I was to be around. I was so miserable I didn’t even want to be around myself. I ended up hopping on Facebook to catch up on all the PMs I had been avoiding. Scrolling through my News Feed something caught my eye. It was a mom on my Friends List who I’ve never met in real life, but have known for awhile now. Like my son, her daughter has autism and is nonverbal. This particular day was a very special one for her. Her daughter was interacting and participating in a simple family activity, something that is so commonplace to most, but to her it was huge. Her daughter was INTERACTING AND PARTICIPATING! She was looking in her mother’s eyes and WANTING to play and ENGAGING her! That status post on Facebook took my breath away. No matter how tired I get or frustrated I am, hearing about a breakthrough from one of our kids literally is like oxygen to me. It gives me hope, it gives me strength to continue the fight because I know our kids can improve. That pity party for myself ended pretty quickly. All I could think about was that precious girl sharing such a spectacular moment with her family. It brought me to tears because I could feel all the emotions that her mom was feeling, especially all of the the LOVE!

I may get down in the dumps sometimes and want to give myself that pity party, but that’s okay. Being the parent of a child with special needs is extremely difficult. It’s setting out into unchartered territory with no map, no compass, no sense of direction, nothing. It’s a learn-as-you-go rollercoaster with some huge ups and huge downs. I’m starting to learn that it’s okay to feel down sometimes. Autism is OVERWHELMING! Some days you need that glass of wine and your own little pity party. Some days you have to dig deep to keep going and push through that Groundhog Day. Some days the rollercoaster gives you a break and you only have huge ups and no downs. You have to remember those days and savor them because when my son has a good day, it’s a GOOD DAY!

18 Responses to Stuck In A Rut

“Stuck In A Rut | The Thinking Moms’ Revolution” was in fact a good blog post. If only there was considerably more weblogs similar to this amazing one in the the net. At any rate, thanks for ur precious time, Laverne

Earlier this week I had an incident at the grocery store, another mother shamed me about having my 6 yr old son in the cart. I confronted her, educated her, picked my son out of the cart, went home and cried in the bathroom so my kids couldn’t see and posted my experience to facebook. I posted in the hopes that all my friends would bash this woman and make me feel better. There was some bashing, but what I found most were comments about how wonderful we have each other. Facebook IS important. I was feeling the why me, why him, the shame of my big boy in the cart, the what if we never recover? Then I felt the love and support even from those I’ve yet to meet and today we went to the store and I refused to put him in the cart. I chased him down and let him yell at me when I caught him and didn’t even look to see if someone thought I was a bad parent. I needed that pity party, I needed to vent, and I needed my facebook friends to lift me up again. I guess we all do. xoxoxoxo!!!

Well said. We all need and have the down days. Then we get back up and back to work. Today is a new day, and my son still has autism. We will succeed, and people will notice. Then, maybe, things can change.

I hear ya! I am 7 years past dx and I still have those days. I tell God, “Okay, I am really, really, ready now to be all done with autism.” Then I remember that I am the one who chose for it to be this “hard”. I chose to fight this fight. I could have just accepted that my son would always be sick from the start. The problem is that this is not the way I was raised. I was raised by fighters who do not take no for an answer. In my family, no is just the jumping off point to eventually get what you want. So I keep plugging away day after day, year after year. “Little my little we will arrive” (Haitian saying). I try to focus on what my son can do (ride a bike, read, swim, tell a joke, sleep through the night!), all that he puts up with having me as his mom (blood draws, 12 million pills, HBOT, IV chelation for 2 solid years), and remember that I would not trade him for any other child on the planet.

“Glucose transporter deficiency syndrome (Glut1 DS) is a pediatric brain energy metabolic syndrome. Glut1 DS was first discovered in 1991 by Dr. Darryl DeVivo at the Colleen Giblin Laboratories, Columbia Presbyterian Medical Center. We know of hundreds of children who have Glut1 DS but believe there may be thousands of children who are undiagnosed. Having Glut1 DS means that an afflicted child’s cells do not pick up and transport glucose to the brain properly. Glucose is the principal source of fuel to the brain. Children with this disorder have a myriad of physical and mental disabilities, ranging from mild to so severe that they cannot walk or talk.”

Glut1 DS Symptoms

“They are many, and they vary in degree. Most often, a child or infant presents with unexplainable seizures. The doctors rule out the usual causes and cannot determine why the child’s seizures persist. Those affected with Glut1 DS usually do not respond to anti-seizure medications. In fact, the gold standard for pediatric seizures, phenylbarbitol, actually inhibits glucose transport to the brain. So, babies and children who are put on this medication usually get even worse symptomatically.

In addition to seizures, other symptoms of Glut1 DS include low muscle tone which leads to physical difficulties including problems with crawling, jumping, walking, running, riding a bike, kicking a ball and many other typical childhood physical activities. All children with Glut1 DS experience problems with speech, both receptive and expressive. This means they may not be able to speak at all, or that they have slurred speech or difficulty accessing and articulating sounds and words and sentences. They also have cognitive and learning delays and disabilities. And if their brains do not get the energy needed for brain growth, microcephaly (shrunken heads) occurs. For a more thorough and scientific discussion of Glut1 DS go to the Colleen Giblin Laboratories website, http://www.giblinlabs.org and read Dr. DeVivo’s paper on Glut1 DS.”

Treatment for Glut1 DS
“The only known treatment to date is a very restrictive diet called the ketogenic diet which is usually used for children with seizure disorders that do not benefit from conventional drugs. It is a treatment of last resort for them. For children with Glut1 DS, it is the only treatment that may help control the seizures and hopefully help with providing energy to the brain. However, it is currently unknown how effective this treatment may be.”

So I hunted some more:http://site.matthewsfriends.org/uploads/File/2010ConferenceSummary.pdf
Glut 1 DS
3) Scenario: a child is diagnosed with autism and some kids with autism also have seizures. Could
any of these patients have Glut1 DS? Autism is not really a feature of Glut1 DS. Autism is not a diagnosis it is a symptom and there are many causes of autism. Autism by itself is not generally a symptom of Glut1. One wouldn’t necessarily test for Glut1 DS in an autistic child. Similar to autism not being a diagnosis, cerebral palsy is also not a diagnosis, it is just a description of what the doctor sees.

Genetic Testing Genetic testing for Glut1 DS about to become more available. Most of the time we can identify the mutation with a gene test. About 5-15% of the time we can’t find the mutation- we believe it is there but can’t find it. Sometimes patients have pieces of the GLUT1 gene missing that weren’t evident before. Finding a mutation helps assess risk for future offspring, also confirms a diagnosis. Right now, insurance may or may not pay for the genetic testing and the cost may be over $1,000. Previously, the physicians have been paying for it.

Look at these descriptions of children with Glut 1 DS, and suggestions on how to best teach them:
“Glut 1 DS Characteristics of Cognition and Behavior”
First: Please remember that these findings are from GROUP data. The data show what children are “at risk for” if they have the Glut 1 DS diagnosis, but not all children will have every characteristic.
Every individual is unique! Each child needs a thorough clinical neuropsychological evaluation to determine his or her own individual strengths and weaknesses and remediation strategies best suited for his/her profile. [WOULDN’T IT BE NICE IF THEY TREATED AUTISM THIS WAY???]

Keeping that in mind, here are 10 Take Home Points & Implications:

[JUST LIKE AUTISM] 1. Across children diagnosed with Glut 1 DS there is a wide range of cognitive function. As a group, scores appear to be normally distributed, but are shifted down from general population about 1 1⁄2 to 2 standard deviations.

[JUST LIKE AUTISM]• Some children’s IQ will be in the “normal” range, but most will have scores significantly lower than expected for general population.
2. Among children with Glut1DS, receptive language skills are stronger than expressive language skills (regardless of overall level of IQ)

[JUST LIKE AUTISM]• Speech therapy is recommended!
– Because speech in individuals with GLUT 1 DS tends to be dysfluent and poorly articulated, children may appear to be more impaired than they are. Speech therapy can help children express themselves with more ease.

[JUST LIKE AUTISM]• Children may be frustrated at times by the difficulties they face getting understood by those who don’t know them well
• For some children augmentative communication devices may be helpful

[JUST LIKE AUTISM] 3. Among children with Glut1 DS, visual attention to details tends to be weak
• These are areas emphasized in academic school work and can be trained and improved
• Visual search puzzle-games like “spot the difference” in pictures, eye-spy, word search and “Where’s Waldo” help train this ability
• Help go over school assignments carefully, step-by-step to help teach your child to focus on details
•
This may be variable throughout the day; there may be “spells” of inattention
page 16 Hinton

[JUST LIKE AUTISM]4. Among children with Glut1 DS, fine motor skills are weak
• This is another areas emphasized in academic school work – writing and copying
• Physical therapy and occupation therapy can help with this
• Encouraging play with blocks and Legos and small items as well as encouraging drawing is recommended
• For some, use of an assistive keyboard may be essential 5. There is a definite bias in cognitive processing style. Children use a sequential processing
6.
approach preferentially. Use this to your advantage!
• They are better at seeing the trees, than the forest
• Use teaching strategies that rely on sequential or step-wise approaches to material.
• Teach one thing, then another and another
• Rely on repetition and rote memorization
• Break large assignments into manageable steps
• Consider using organizational strategies similar to those recommended for children with attention deficit disorder
• Explain clearly what the general point or “take home” message is Children with
[SO EXACTLY LIKE AUTISM/ASPERGER’S, I’M WONDERING WHY NOBODY HAS SEEN THIS] Glut1 DS have difficulty using simultaneous or “whole picture” processing
approaches. Be aware of limitations
• They have difficulty seeing the forest, and tend to focus on the individual trees
• Give extra help when trying to pull together the whole picture
• Talk about stories and what the point is (fables and folktales work well for this!)
• Play with abstract puzzles where the whole is greater than the sum of the parts –work on integrating visual information
***************************************

So is anyone here asking the same questions I am?
How much overlap is there between the symptoms of autism and the symptoms of Glut1 DS? How much overlap is there between effective treatments of both?

How does vaccine reaction affect both?

Is it possible for any vaccine ingredient to have any effect on glucose transport? Can vaccine reactions (like seizures) have a domino effect on glucose transport?

Very true. Some days I let myself think of what it would be like if my daughter wasn’t autistic. I play the day in my head, which is depressing when you click out the the daze and realize that isn’t going to happen. Some days I stay in our bubble where everything is great. She spends all day in the pool, takes a nap (which is what she is doing now or I wouldn’t have time to write) and she eats all the crap that’s bad for her but makes her happy (cookies for breakfast). The outer world doesn’t exist and in our world she is normal and quite happy. Sometimes the “outer” world just sucks. People are mean. Professionals are incompetent. I really don’t know where I am going with this, other than I get it and it’s nice to know others get what happens to us – thanks for the blog.

Autism parenting is a lot like amateur golf. You can have 17 holes of ball losing, club breaking, golf cart crashing misery, but that one hole where you were on in regulation and made the birdie put…makes it all worthwhile.
And that’s why we can’t stop recovering our kids, and playing golf.